Støt dansk biologisk forskning i neuroimmunsygdommen ME
Support Danish Biological Research in the Neuroimmune Disease ME
What is ME?
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) and many other names, is a serious, debilitating neuroimmune disease that affects millions of people around the world. The condition can cause significant impairment and disability. Up to 2.5 million Americans and about 30.000 danes are estimated to have ME.
Usually the illness is triggered by an infection or a similar event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals or heavy metals. Studies have found evidence of neuroinflammation in ME-patients as well as immunological abnormalities. Also dysfunction of the energy metabolism and various parts of the endocrine system are among the organic findings.
Difficult to Get a Diagnosis
Diagnosing ME/CFS in the clinical setting is a challenge. Patients often struggle with their illness for years before receiving a correct diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed. In multiple surveys, 67 to 77 percent of patients have reported that it took longer than 1 year to get a diagnosis, and about 29 percent have reported that it took longer than 5 years.
Seeking and receiving a diagnosis can be frustrating for several reasons, including skepticism of health care providers about the serious nature of ME/CFS and the misconception that it is a psychogenic illness or even a figment of the patient’s imagination.
Less than one-third of medical schools include instructions on ME/CFS in the curriculum, and only 40 percent of medical textbooks encompass information on the disorder. ME/CFS often is seen as a diagnosis of exclusion, which also can lead to delays in diagnosis or to misdiagnosis of a psychological problem.
Doctors Lack Knowledge on ME
Once diagnosed, patients frequently complain that their health care providers do not know how to deliver appropriate care for their condition, and often subject them to treatment strategies that exacerbate their symptoms.
ME/CFS can cause significant impairment and disability that have negative economic consequences at both the individual and the societal level. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.
The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually, $9.1 billion of which has been attributed to lost household and labor force productivity. Reduced earning capacity often have devastating effects on patients’ financial status.
Literature on mortality associated with ME/CFS is sparse. One study found that cancer, heart disease, and suicide are the most common causes of death among those diagnosed with ME/CFS, and people with ME/CFS die from these causes at younger ages than others in the general population. However, these figures cannot be generalized to the overall population of ME/CFS patients due to the methodological limitations of the study.
MY = muscle
ALGIC = pain
ENCEPHALO = brain
MYEL = spinal cord
ITIS = inflammation
No biological ME-Research in Denmark
Despite numerous medical articles published worldwide on physiological abnormalities in ME-patients, far too many Danish physicians still insist that ME is a somatoform disorder i.e. an illness caused by psychological traumas. Consequently, no biological ME-research has been subsidized in Denmark, and no private funds have supported this area neither. As a doctor answered when asked why the medical community in Denmark rejects to pay attention to ME:
"Well, we don't really believe ME to be a real physical illness. In addition, there is no research funds in this field, no prestige associated with ME, so if you want to pursue a successful carriere in medicine, it is definitly no ME you should pay attention to," Dr Ellen Bøtger Pedersen said.
This is why it is so profoundly important to get started funding bio-medical ME research in Denmark as soon as possible. Sufficient research funds and proper information about the biological nature of ME should hopefully change the attitude of sceptical doctors, and thereby create the foundation for the right research initiatives. So please donate today.
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:Redefining an Illness,Washington (DC): National Academies Press (US); 2015 Feb.
(02) Jason et al. Managing chronic fatigue syndrome: overview and case study. AAOHN J.1999 Jan;47(1):17-21.
(03) Fluge et al.: B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment, July 1, 2015 Plosone, 10.1371/journal.pone.0129898.
(04) Carruthers et al.: Myalgic encephalomyelitis: International Consensus Criteria,J Intern Med. 2011 Oct;270(4):327-38.
(05) Collin et al.: Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study, BMC Fam Pract. 2017 May 5;18(1):60.
(06) Solomon et al: Factors influencing the diagnosis of chronic fatigue syndrome, Arch. Intern Med., 2004, Nov.8.
(07) Bayliss et al., Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies,BMC Fam Pract. 2014 Mar 7;15:44.
(08) Torres-Harding et al.: Evidence for T-helper 2 shift and association with illness parameters in chronic fatigue syndrome (CFS), Bull IACFS ME. 2008 Fall;16(3):19-33.
(09) Fossey et al., Sleep quality and psychological adjustment in chronic fatigue syndrome, J Behav Med. 2004 Dec;27(6):581-605.
(10) Jason et al., The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome, AAOHN J. 2008 May;56(5):189-95.
(11) Jason et al.,Causes of death among patients with chronic fatigue syndrome, Health Care Women Int. 2006 Aug;27(7):615-26.
(12) Maes et al., Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: Disorders in the inflammatory and oxidative and nitrosative stress pathways may explain cardiovascular disorders in ME/CFS, Neuro Endocrinol Lett. 2009;30(6):677-93.
(13) Torres-Harding et al.,The associations between basal salivary cortisol and illness symptomatology in chronic fatigue syndrome, J Appl Biobehav Res. 2008 Jan 1;13:157-180.
(14) Nakatomi et al., Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study, J Nucl Med. 2014 Jun;55(6):945-50.
(15) Twisk,The status of and future research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: the need of accurate diagnosis, objective assessment, and acknowledging biological and clinical subgroups,
Front Physiol. 2014 Mar 27;5:109.
(16) Klimas et al.: Immunologic abnormalities in chronic fatigue syndrome, J Clin Microbiol. 1990 Jun; 28(6): 1403–1410.